Hey, I am in the USA but just wanted to offer some moral support. Don't give up...you will get this figured out. You might have better luck getting it from a gyno vs. a derm, if you explain you have a hormone imbalance. They could even run a hormone panel for you to prove you need Spiro, if it comes to that.

I see you're taking Saw Palmetto. Personally I am not a big fan of self medicating since it can often make people worse without realizing it, even if that med works great for some. Like Zinc...it made me break out worse. But so many people wear by it. Do you think that could be making it worse for you? Also, did you just start using Cetaphil or is that new?

If worse comes to worse, you can go for Accutane if no one will prescribe Spiro. Just because some people in your family had mental issues does not mean you will go insane on the drug. I am pretty sure there have been stories of people with no mental illness history having depression on the drug? So it seems random to me. You would need to carefully monitor yourself for any signs of changes in behavior, but that's it. But, I would highly recommend pushing for Spiro first since Accutane is not a hormone balancing drug, as you know, and it could come back after the course...though probably not as severely.

10 hours ago, cloudydreamer said:

Hey, I am in the USA but just wanted to offer some moral support.

Hi, thank you so much for replying! I had a hormone panel done a few years ago when they suspected a thyroid issue and they all came back within normal (even though every sign in my body says that I have too much androgen or at least am hyper-sensitive to androgens) I'm actually wondering if I might have underlying PCOS because as well as the severe hormonal acne I also have a completely wacky cycle and always have (though it's been masked with the pill for a long time it dates all the way back to when I was 13). When I was off the pill for 4 months I didn't have a single period and my hair started falling out! But the doctors don't seem much interested in investigating it, they just give me the brush off.

Yeh I have been taking Saw Palmetto (had it pegged as a natural alternative to the pill before things got completely out of hand) and I thought I'd come off it once I was back on the pill but every time I try to reduce my dose I break out in more cysts! It seems to help a bit with the cystic side of things but not much with the normal smaller stuff. Basically I don't really want to be on it anymore but I'm too scared to try coming off it at the moment unless I can replace it with Spiro. I've been using Cetaphil for years and years because my doctor recommended it. I have been clear whilst using it before so I don't think it can be causing any issues.

It's me myself that has a bad mental health history (total breakdown with multiple suicide attempts a few years ago) but that came after them consistently refusing to prescribe Accutane because I was on antidepressants so I felt like I had no way of helping my skin and no way of not feeling depressed whilst my skin was so awful so I felt totally trapped in a vicious cycle. I agree with you that it's a false correlation anyway. I think people with the severity of acne to warrant Accutane are most likely depressed before they start the course and perhaps the initial breakout (which is something that really scares me about Accutane!) exacerbates it in some people. But basically I think with my history they don't want to be held responsible if I do anything, even though I'm much more likely to if I don't find a solution for my skin! Sorry for the long ramble, but I really appreciate your input. Have you been on either Spiro or Accutane yourself? What were your experiences?

6 hours ago, MoonlitRiver said:

Hi, thank you so much for replying! I had a hormone panel done a few years ago when they suspected a thyroid issue and they all came back within normal (even though every sign in my body says that I have too much androgen or at least am hyper-sensitive to androgens) I'm actually wondering if I might have underlying PCOS because as well as the severe hormonal acne I also have a completely wacky cycle and always have (though it's been masked with the pill for a long time it dates all the way back to when I was 13). When I was off the pill for 4 months I didn't have a single period and my hair started falling out! But the doctors don't seem much interested in investigating it, they just give me the brush off.

Yeh I have been taking Saw Palmetto (had it pegged as a natural alternative to the pill before things got completely out of hand) and I thought I'd come off it once I was back on the pill but every time I try to reduce my dose I break out in more cysts! It seems to help a bit with the cystic side of things but not much with the normal smaller stuff. Basically I don't really want to be on it anymore but I'm too scared to try coming off it at the moment unless I can replace it with Spiro. I've been using Cetaphil for years and years because my doctor recommended it. I have been clear whilst using it before so I don't think it can be causing any issues.

It's me myself that has a bad mental health history (total breakdown with multiple suicide attempts a few years ago) but that came after them consistently refusing to prescribe Accutane because I was on antidepressants so I felt like I had no way of helping my skin and no way of not feeling depressed whilst my skin was so awful so I felt totally trapped in a vicious cycle. I agree with you that it's a false correlation anyway. I think people with the severity of acne to warrant Accutane are most likely depressed before they start the course and perhaps the initial breakout (which is something that really scares me about Accutane!) exacerbates it in some people. But basically I think with my history they don't want to be held responsible if I do anything, even though I'm much more likely to if I don't find a solution for my skin! Sorry for the long ramble, but I really appreciate your input. Have you been on either Spiro or Accutane yourself? What were your experiences?

You are welcome. How are you feeling today?

I understand. It's very frustrating how doctors will brush off hormone panels as normal when just even the slightest treatment could make a huge difference. That's how I feel about my thyroid -- all signs point to an issue, from me being excessively cold [especially in hands/feet] to losing eyebrow easily to always having a very tight feeling in my throat and the inability to wear a choker or scarf without getting a lump!I've had so many panels run and an even an iodine test and apparently it was all 'normal'. However, I believe I have a form of Hashis which is why the lump in my throat comes and goes, same with the symptoms, and I am going to seek a holistic doctor when I move to help me. Sometimes the tests can read as normal when really you're on the tail end of too low or too high but the doctor just doesn't see it as a problem since it's not extreme enough.

The fact you get a weird cycle and hair loss off the pill does point to some serious imbalance going on. Possibly PCOS, you're right. Especially if your periods are heavy and/or painful. If you spot before your period that's also the sign of an imbalance...I have that too, it indicates low progesterone apparently, from likely going off the pill. Apparently a lot of women with PCOS symptoms have low progesterone and higher T levels and I think that's me. I was also on the pill for a year and ever since, my period cycles vary by length and I spot brown blood before I get it. I'm quite upset about this and have no idea how to raise my progesterone. It's progesterone that actually helps prevent acne, did you know that? I just learned that today. No wonder our acne has been worse since coming off the pill...it made it harder for our bodies to make it!AlsoI'd stay on SP if it's helping then. I just wanted to make sure since I've had nightmare experiences with self-medicating with supplements.

I'm sorry you've had all these struggles. I've also had depression and anxiety, so I empathize. I agree that many people who take Accutane actually end up LESS depressed because their appearance improves. And hey...I had a bit of an IB Spiro that was exacerbated by a crappy wash and foundation, unfortunately, but the more I take it the more it's helping and you just have to pull through. Although I was upset about this and vented on the emotional support board the other night [mainly about the makeup...I can't stand how Ican't wear any without a horrible reaction], in a way it's almost a relief to know the breakout is supposed to happen since it's your body's way of purging the toxins, the old sebaceous plugs [I've had tons of tiny ones come out, especially around my chin and on my nose from where excess oil was made all the time], etc. It's just a part of the process. Exfoliating with a wash rag a few times a week has helped meand now my skin is baby smooth for the first time in a year. Also, any spots that do appear tend to resolve much faster than they ever would have before.

Also, you may not even have an IB anyway oneither drug. Plus if one seems to appear it's likely just the purge I mentioned and should disappear within 4-5weeks. You can figure thatyou'll probably breakout in that time anyway, so why not just take Accutane and get the same breakout give or take a few more spots, right? Same with Spiro or the pill or whatever.

3 hours ago, cloudydreamer said:

 

You are welcome. How are you feeling today?
 

Pretty hopeless to be honest.... my dermatology appointment isn't until 20th January and I feel like I'm doing everything I possibly can in the meantime but to no avail, because I'm still breaking out and getting cysts. *sigh* Can't even leave the house at the moment so my life is just on hold and it feels terrible. I had clear skin 8 months ago but I ruined it by coming off the pill and now I can't get it back.

Sorry to hear the doctors aren't taking your thyroid problem seriously, but that sounds exactly like the kind of reaction I've had from doctors as well. They just don't want to know. I hope the holistic doctor takes the time to help where the others haven't, but you could always try going to a different regular doctor as well because you clearly have persistent symptoms that need addressing. There are some good doctors out there who will listen (or so I've heard!)

When I first started my periods I was on constantly for about 6 months and had to go on a pill just to stop it so my cycle has never been normal and I got none at all off the pill which was quite worrying along with the hairloss but when I told the doctor they just shrugged it off and said I could go back on the pill if I wanted, which I did in the end because of my skin. Hasn't helped with the skin yet but at least the hairloss seems to have slowed down a bit. Just wish the skin would follow! I didn't know it was the progesterone that helped skin, I thought it was the estrogen (and in the case of my pill the antiandrogen). There are some foods and supplements that are supposed to raise progesterone but I'd understand you not wanting to try that if you've had bad experiences. It's hard to know what to do to balance out your hormones when you're not really sure where the problem lies. Have you considered going back on the pill or are you trying to stay off it? Think it probably does more harm than good in the long run but I just can't seem to cope without it.

I can sympathise with that, I have quite a love/hate relationship with makeup as well. Can't leave the house without it but almost every one seems to make me break out. My old reliables are Garnier Oil Free BB Cream (though sadly that's not enough coverage for me anymore) and Maybelline Pure Liquid Mineral Foundation which is really hard to get since they discontinued it but the Affinitone one is the same ingredients. How long have you been taking Spiro now? Sorry you're having to deal with an initial breakout, they're horrible. Hope you get through it soon and come out the other side with beautiful clear skin!

I'm so sorry. I've been there myself these last 2 months, just not wanting to go out and avoiding the world due to embarrassment and anxiety...it's the worst. It definitely helps to try and go out anyway though. I forced myself and it's helped me avoid having my life ruled by acne. People will still treat you with respect and kindness even with acne. We can't let ourselves be defined by the acne, or else it will have a kind of energetic power over our lives and self-esteem and that's the last thing we want...we want it gone. It's helped me to just go about my life acting like the acne is not there. I decided yesterday that I'm not going to feed my energy into it while I wait for my treatment to kick in. 

Thanks, I think a holistic doctor will help me a lot more. I'm looking for someone to treat my symptoms, not slap me with a diagnosis, so alt. medicine seems better for that. 

So you had a period for 6 months straight? That's awful.  I hate how some doctors are so blase and nonchalant when they should be more worried and vigilant. Spiro helps with hair loss, by the way. It's the balance of P and Estrogen that creates good skin. Low P can lead to acne because P is the natural defense against the conversion of T into DHT, which causes acne. Estrogen is also important for clear, plump and glowing skin. Even a slight imbalance can cause issues. Hormones suck so badly. Right now I want to see how Spiro works on its own, because it could potentially increase my estrogen. And apparently in 30% of women, after stopping Spiro the acne never comes back. We'll see. I'm 22 and I have also grown in this past year, so maybe my hormones are just fluctuating and will calm down in the next few years. 

I've been on it for a little over 3 weeks. I have already noticed a positive change and a drastic decrease in oil which is great. I think the jawline IB got way worse from the makeup I used. It calmed down a ton after I quit the makeup. Now it's practically gone. I am sure one year from now, both of us will be enjoying clear, radiant skin.  

5 hours ago, cloudydreamer said:

I'm so sorry. I've been there myself these last 2 months

Sorry to hear you've been going through the same. I think people without acne can't possibly understand how much it affects you mentally and impacts on every area of your life. I know I shouldn't let it, but I can't help it, it just upsets me so much and I feel like such an inferior, sub-human, disgusting monster. When my skin's good I can fight the mental health problems and lead a vaguely normal life but when the skin's bad my mental health goes completely to pot and I just get paralysed. That's why I need it to get better so badly! I wish I could be one of these people who remains confident and active even with acne, but I just can't.

Yeh, my first one! Wasn't much fun and they've never been regular since except when I'm on the pill. They've never shown any interest in investigating the cause, just shove me back on the pill again, but I'm convinced that and the acne are linked and that my hormones are seriously messed up in their natural state which is worrying for lots of reasons. I think it's wise to give the Spiro a chance to work on its own and it sounds like it's starting to which is great and makes me want to try it even more! Trouble is my appointment is so far away and even when I get the appointment I highly doubt I can convince any NHS dermatologist to prescribe off-label like that.

That's really interesting.... I'm 24 and a couple of years ago I grew a couple of inches as well! That was when my doctor ordered the hormone panel because she said I shouldn't be growing at that age so she wanted to check there was nothing sinister going on but everything came back "normal" (or within what they call normal and don't do anything about anyway....) It sucks still dealing with this in your 20s doesn't it? It feels so unfair when everyone else grew out of it in their teens and now has beautiful skin. *sigh*

On 11/24/2016 at 4:24 AM, MoonlitRiver said:

Sorry to hear you've been going through the same. I think people without acne can't possibly understand how much it affects you mentally and impacts on every area of your life. I know I shouldn't let it, but I can't help it, it just upsets me so much and I feel like such an inferior, sub-human, disgusting monster. When my skin's good I can fight the mental health problems and lead a vaguely normal life but when the skin's bad my mental health goes completely to pot and I just get paralysed. That's why I need it to get better so badly! I wish I could be one of these people who remains confident and active even with acne, but I just can't.

Yeh, my first one! Wasn't much fun and they've never been regular since except when I'm on the pill. They've never shown any interest in investigating the cause, just shove me back on the pill again, but I'm convinced that and the acne are linked and that my hormones are seriously messed up in their natural state which is worrying for lots of reasons. I think it's wise to give the Spiro a chance to work on its own and it sounds like it's starting to which is great and makes me want to try it even more! Trouble is my appointment is so far away and even when I get the appointment I highly doubt I can convince any NHS dermatologist to prescribe off-label like that.

That's really interesting.... I'm 24 and a couple of years ago I grew a couple of inches as well! That was when my doctor ordered the hormone panel because she said I shouldn't be growing at that age so she wanted to check there was nothing sinister going on but everything came back "normal" (or within what they call normal and don't do anything about anyway....) It sucks still dealing with this in your 20s doesn't it? It feels so unfair when everyone else grew out of it in their teens and now has beautiful skin. *sigh*

I'm the same. I already have fragile mental health and this just makes it way worse. 

I think you should get the hormone panel run again before taking any hormone drugs just to be safe. I kind of wish I had done that weeks ago. I mean, the Spiro has been helping my skin, and made it soft, but now my lashes and eyebrows are starting to shed more for some reason. It's weird because with any shedding story I've read about Spiro happens months into treatment, not 2 weeks later. I feel really down....I have to stop the med and see if the shedding stops, but it's atypical for me so it's probably the drug. I'm definitely not saying Spiro itself is BAD, I'm just saying it seems that it's interacting with some kind of pre-existing imbalance inside me, whether thyroid or estrogen related or whatever. So I got blood test scripts today and I see a doctor for it Monday. 

11 hours ago, cloudydreamer said:

I'm the same. I already have fragile mental health and this just makes it way worse. 

I think you should get the hormone panel run again before taking any hormone drugs just to be safe. I kind of wish I had done that weeks ago. I mean, the Spiro has been helping my skin, and made it soft, but now my lashes and eyebrows are starting to shed more for some reason. It's weird because with any shedding story I've read about Spiro happens months into treatment, not 2 weeks later. I feel really down....I have to stop the med and see if the shedding stops, but it's atypical for me so it's probably the drug. I'm definitely not saying Spiro itself is BAD, I'm just saying it seems that it's interacting with some kind of pre-existing imbalance inside me, whether thyroid or estrogen related or whatever. So I got blood test scripts today and I see a doctor for it Monday. 

Oh no, I'm sorry to hear that! I have heard stories (on these boards) about Spiro causing hairloss. I had really bad hairloss from coming off Dianette but that was 3 months later because a hair's life cycle is about 3 months so it takes that long to respond to whatever's causing it. Not sure if maybe lashes and eyebrows have a shorter life cycle and that's why they've been hit first? I think you're wise to come off the drug if it's causing problems and I really hope it resolves itself for you soon! Also hope the hormone tests bring some clarification. Sorry this is happening to you. Sending hugs xxx

3 hours ago, MoonlitRiver said:

Oh no, I'm sorry to hear that! I have heard stories (on these boards) about Spiro causing hairloss. I had really bad hairloss from coming off Dianette but that was 3 months later because a hair's life cycle is about 3 months so it takes that long to respond to whatever's causing it. Not sure if maybe lashes and eyebrows have a shorter life cycle and that's why they've been hit first? I think you're wise to come off the drug if it's causing problems and I really hope it resolves itself for you soon! Also hope the hormone tests bring some clarification. Sorry this is happening to you. Sending hugs xxx

Thanks! I'm really not 100% but I imagine the lash/brow life cycle is similar to regular hair. I just think it's a bit too strong for me and could be a shock to my system. With Diane-35 that makes sense since plummeting estrogen can cause hair loss.

Hey everyone, so I managed to get an appointment cancellation just before Christmas this Friday. So posting here again to ask if anyone has managed to get spironolactone prescribed by an NHS dermatologist in the UK? I still feel this is my best option if I can persuade them, but I'm not convinced I'll be able to. Thanks!

Hey, I'm in the US so I can't offer much advice, but I've been reading this thread and just wanted to say good luck to you. I feel that many doctors don't really consider/don't have much knowledge about hormonal acne, especially about Spiro, not only in the UK  
I hope your appointment goes well tomorrow!  

2 hours ago, FiercePenguin said:

Hey, I'm in the US so I can't offer much advice, but I've been reading this thread and just wanted to say good luck to you. I feel that many doctors don't really consider/don't have much knowledge about hormonal acne, especially about Spiro, not only in the UK  
I hope your appointment goes well tomorrow!  

Thank you! I'm not expecting to get very far..... I'm fully expecting them to have never heard of spiro and just want to shove me on some other useless antibiotic. But I'll let you all know. I'll probably come on here moaning about it afterwards!

So I was expecting to have to have to work really hard to persuade a dermatologist who wouldn't have even heard of spiro to prescribe it for me. Turns out she'd not only heard of it but had even prescribed it before, so with my profile and the fact that my mental health is a contraindication for isotretinoin she actually thought it was a really good idea to try this first. Just took my first 50mg pill and upping to 100mg after three or four weeks if it's not doing anything by that point. Fingers crossed it works for me and doesn't have hair loss as a side effect! Or a nasty initial breakout....

On 23/12/2016 at 1:25 PM, MoonlitRiver said:

So I was expecting to have to have to work really hard to persuade a dermatologist who wouldn't have even heard of spiro to prescribe it for me. Turns out she'd not only heard of it but had even prescribed it before, so with my profile and the fact that my mental health is a contraindication for isotretinoin she actually thought it was a really good idea to try this first. Just took my first 50mg pill and upping to 100mg after three or four weeks if it's not doing anything by that point. Fingers crossed it works for me and doesn't have hair loss as a side effect! Or a nasty initial breakout....

MoonlitRiver,

i have just stumbled accross your post and wondered how your skin is since spiro? Do you know if it is becoming easier to get prescriptions in the UK?
i have suffered with hormonal acne in the past which I managed with the pill (dianette) and benzoyl peroxide products, I had a few years of being off the pill (to have a baby) and moderate acne. 
since having  son a year ago my skin has gone to the worst it's ever been  after lots of online research I really think spiro will help me.
thanks

On 4/5/2017 at 7:57 PM, Clear-skin-dreamer said:

 

MoonlitRiver,

i have just stumbled accross your post and wondered how your skin is since spiro? Do you know if it is becoming easier to get prescriptions in the UK?
i have suffered with hormonal acne in the past which I managed with the pill (dianette) and benzoyl peroxide products, I had a few years of being off the pill (to have a baby) and moderate acne. 
since having  son a year ago my skin has gone to the worst it's ever been  after lots of online research I really think spiro will help me.
thanks

Hi Clear-skin-dreamer, I reckon it is getting easier to get Spiro in the UK. I was expecting to have to fight really hard to get my dermatologist to prescribe it but she literally just said "yeh alright, we can give that a go." I think going prepared and researched is the key. This new medicine assessment by an NHS trust in Lancashire proved particularly useful for me: [Edited link out] and also this research article on its effectiveness:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3315877/  I brought both of these to my appointment and my dermatologist was really interested to read them. It can still only be prescribed by a consultant dermatologist though (or someone acting under them with their permission and supervision) as acne is an off-label usage. 

In terms of how my skin is, I would say quite a bit better than it was but still frustratingly breaking out. I think I'm probably going to give the Spiro one more month to see if it can properly clear my skin and if not we're considering a low dose Isotretinoin course over a long time period. Will keep you posted! Definitely think it's worth a try if you think your acne is hormonal though.

Hello,

I know this post is about two years old but I just wanted to give a "Spironolactone in the UK" update.
I live in the UK and have had no success after asking two GP's for Spironolactone so I decided to go private (I have to wait 6 months to even be referred to an NHS dermatologist even though I've had acne for 30 = years). I contacted dermatologist Dr Nick Lowe in London (google him and he should come up) and went to their "acne clinic" last week. I saw a lovely nurse who agreed that before using Accutane we should try Spironolactone. I had some blood work done - again privately- and am waiting for my prescription for Spironolactone to come in the mail (the nurse called today and said it was in the post). So don't give up - it is possible to get it in the UK. I'm hoping that my GP will accept a letter from the (private) Dermatologist as a recommendation to prescribe me the medication on the NHS, however if not then at least there is a way here in the UK albeit costly . Here's a breakdown of the cost so far:

Consultation = 150
Blood work = 175
Then the cost of the medication itself which I'm yet to purchase however Boots told me that 28 days of 25mg is 6.

I hope this helps someone.

oops sorry this topic is about 1 year old I mean 🙂

Just a quick update. I bought the Spironolactone today and at Boots it cost 9.84 for 90 tablets of 100mg with a private prescription. Considering all the money I've spent on creams, lotions and "magic potions" this would be a good investment - if it works! Wish me luck (as I do for all of you). 🙂

I've been on spiro since 2008. I was prescribed it by an NHS consultant at Stepping Hill in Stockport. I went in wanting accutane and was very put out to be given spiro instead. But it did have a great impact, once I got past the horrific IB.

I don't see a derm anymore. Luckily my GP was happy to keep prescribing and now I live overseas where I can buy it over the counter.

Every so often I will lower my 200mg a day dosage, but then the grease starts running down the sides of my nose and a nasty breakout begins. So I guess I still need it.

Glad to hear that you were able to get spiro on the NHS and really pleased to hear that it's working for you!

On 4/12/2017 at 4:35 PM, MoonlitRiver said:

Hi Clear-skin-dreamer, I reckon it is getting easier to get Spiro in the UK. I was expecting to have to fight really hard to get my dermatologist to prescribe it but she literally just said "yeh alright, we can give that a go." I think going prepared and researched is the key. This new medicine assessment by an NHS trust in Lancashire proved particularly useful for me: [Edited link out]and also this research article on its effectiveness: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3315877/ I brought both of these to my appointment and my dermatologist was really interested to read them. It can still only be prescribed by a consultant dermatologist though (or someone acting under them with their permission and supervision) as acne is an off-label usage.

In terms of how my skin is, I would say quite a bit better than it was but still frustratingly breaking out. I think I'm probably going to give the Spiro one more month to see if it can properly clear my skin and if not we're considering a low dose Isotretinoin course over a long time period. Will keep you posted! Definitely think it's worth a try if you think your acne is hormonal though.

Hi there, just wondered how you were getting on with the spiro?

On 12/5/2017 at 11:22 PM, Helcatz said:

Hi there, just wondered how you were getting on with the spiro?

Hey, I'm not actually on the spironolactone anymore. I did get pretty good results after about 8 months on it, but the side effects were too much for me on the dose that worked for the acne (150mg) so I ended up switching to roaccutane instead x

On 1/31/2019 at 4:25 AM, Paquette said:

I'm on this drug for acne and to regulate hormones and my skin has never been clearer. Accutane didn't even work for me, but spironolactone did! No side effects, it's literally a miracle drug.

 

What dosage of spironolactone are you on? I started on 100 mg but just got increased to 150mg yesterday.